Happy Every Day
October 01, 2006 7:00 AM

I'm posting a couple pictures, one of Juliana playing in a packing box full of styrofoam and one of Juliana, Tami, and Nana. Juliana remains well and happy. She's adjusted to her school schedule and now she's usually asleep when I get there about 10:15. Her routine throughout the night remains the same: mouth care, eye care, respiratory treatments, suctioning as needed to keep her airway clear, tube feedings, and a couple medications. She usually sleeps through anything I do to her. I used to leave in the morning with her still sleeping, but now I wake her up so she can get ready in time for school. As soon as she's awake she bounces right up, signing "school!"

We have a routine she insists on following. I'm to sit in "our" big rocker recliner, then she comes running and leaps up onto my lap. She wants to rock hard, and pushes on my big belly and boobs to get us rocking harder. Then she wants to do the puzzle with the big wooden pieces. She dumps it out on my lap and puts the pieces in my shirt pocket. Then she takes the pieces out one by one, puts them in place, then signs "all done." Next we have a couple books we look at. By this time she's glancing into the hallway and signing "Mom." Sometimes Kendra comes into the room and they roll on the floor hugging each other. Juliana starts helping me pack up my stuff. She takes my slippers and puts them in the closet. When she catches a glimpse of Tami she goes running with her arms outstretched, and leaps into her mom's arms. She's happy like this every morning.

Some people may wonder why I write about little everyday occurrences like this. The reason is because I've received many requests from people who care about Juliana and love to read about her everyday life. I've had a few people ask why I post so many pictures. The reason is because many people want to see more pictures of Juliana, not less! Some people actually think this web site is exploitative of Juliana, but most people understand—this web site is a testament and a tribute to Juliana and the people who love her. The thousands of people who "get it" and have written kind, positive, wonderful notes and letters (many with pictures of their own families) have restored my faith in humanity. I'm looking forward to our guestbook reopening soon.

—Jeanne ("Party")